A-List Advocacy: A Discussion of Celebrity Patients

Celebrity patients have been raising awareness and funding for various diseases, such as cancer, for over half a century. OncLive Nursing discussed these high-profile patients with Barron H. Lerner, MD, PhD, author of When Illness Goes Public: Celebrity Patients and How We Look at Medicine, and the Angelica Berrie-Gold Foundation associate professor of Medicine and Public Health at the Columbia University College of Physicians & Surgeons and the Mailman School of Public Health.

OncLive Nursing: What is it about the celebrity patient that draws your interest?
Dr Lerner: I’m a historian in addition to being a doctor, so I noted that so many of the ways in which the public was being alerted to various medical issues and conditions seemed to be through famous cases. So you might expect the opposite, where it’s randomized controlled studies or sophisticated scientific information, but it was often a famous person’s story. So I got interested in trying to explore why that was the case and what these stories did and didn’t tell us.

Do most celebrities embrace the celebrity patient role?
I wouldn’t say most embrace it. I would say many embrace it, and others go less willingly. But it’s become almost obligatory, and this is a real change. The first story I talked about in my book was Lou Gehrig. He was very, very reluctant. He didn’t want this at all. He wanted to be left alone, but he sort of got thrust into a spotlight.

In the intervening 70 years, it’s become almost mandatory, just because there’s no privacy anymore and because other celebrities have done this in the past. Some I think really want to tell their stories and are comfortable talking about these sorts of things in public, and then there’s another big subset that just sort of rolls their eyes and says, “I guess I’m going to have to talk about this because people are going to be asking questions.”

What is it about our culture that draws us to celebrities and accordingly, celebrity patients?
That’s chapter 1 in my book. I don’t get it, personally. But there’s something about celebrities that people really admire, which is, I think, their money, their fame, their abilities, and their wisdom. And why that is, deep down, I don’t know, but it’s just a fact. And so it really was a natural progression. If you’re interested in the lives of celebrities who are healthy and their marriages, and their divorces, and their movies, and what they’re wearing on the red carpet—when they become sick, why not be interested as well? And that’s exactly what gradually happened.

And there’s a bit of a quid pro quo there. I think that if you are a celebrity and you have benefitted from the publicity surrounding your movies or surrounding other things you’re doing, it’s hard to [then] say “I used the media before, and now I’m not saying anything about my illness.” So there’s almost an obligatory aspect to when these guys get ill that they’ve got to talk then as well.

What role have celebrity patients played in creating the modern, more empowered patient? How have they changed the physician-patient relationship?
I think that celebrities tend to be well connected. They tend to have a lot of money. And those factors, when you get sick, will enable you, if you’re interested, to be able to pursue a number of medical options. Celebrities can contact people who are on the cutting edge of technology, and they can access multiple doctors, and they can get advice from a lot of different people. That’s one of the appeals to ordinary patients—they see celebrities doing this, and they say, “If the celebrities do this, they must know what they’re doing. Why don’t I try to emulate that sort of thing, and why don’t I go into my doctor’s office with the following questions?”

A couple of the best examples would be people like Michael J. Fox and Lance Armstrong. If you go to their websites, they’re very instructive about what you should say to your doctor…It’s very empowering. But one of the problems here is everyone’s disease is different. And people can run into problems if they say “I’m just going to do exactly what Michael J. Fox did,” because that may not be good advice.

Have there been any major scientific breakthroughs that have been facilitated by celebrity patients?
There are more minor breakthroughs. Some people will say Brian Piccolo from the movie Brian’s Song. He had a cancer that was actually not testicular cancer. It was another type of what’s called a gonadal cancer related to sex organs. But the money that was collected in his name from the NFL that got applied to research, a lot of it got applied to testicular cancer because the other cancer was so rare that fewer people were researching it. And some of the research that went into that really got a better handle on how to treat testicular cancer. It is said that Lance Armstrong, benefitted from that increased knowledge.

That’s less of a straight line than you would tell in storybook fashion. It’s [usually] more complicated than that. But that’s an example where money was raised specifically as a result of a particular celebrity, and that helped to generate a particular research advance.

The other stories are less direct. You can think about Betty Ford and breast cancer. That event propelled breast cancer into the spotlight. When Betty Ford talked about her breast cancer, a slew of money started going to breast cancer [research]. And then down the road, there were a bunch of very important [breast cancer] developments that, again, indirectly could be linked to that.

What negative impact have celebrity patients had?
The celebrity cases can definitely give misinformation. So Steve McQueen is a quintessential example where he goes down to Mexico and starts getting this very complicated alternative treatment. There’s sort of this brief moment where he’s “cured,” but it turns out to not be true, but people think it’s true because enough people said it. And then people start going down to Mexico to get the same thing he did, which has never been shown to be of any value in a clinical trial.

Farrah Fawcett, similarly. I wrote a very carefully worded piece when she said, “I’m cured,” [that said that people should] take this with a grain of salt. Farrah Fawcett [followed] the same path that so many celebrities have, which is an obligatory period of optimism. Nobody wants to say anything bad, but the fact was, I could tell from being a doctor and how they were treating her, that her cancer was going to kill her. I knew it, assuming what I was reading was true. And I didn’t really want to come out and say that, but I just wanted to alert people that the story being told was a very contrived story. Ditto Patrick Swayze. You just knew the guy was not going to make it.

It’s better than it used to be because now, in many cases, such as Michael Douglas, the journalists are actually asking better questions. They’ll ask, “What do you mean it’s Stage IV but he says he’s going to be cured?”

The main theme of my book is how do you deal with these individual cases when they’re not necessarily representative. And that’s a point that I try to just talk about over and over in the book…It’s one famous case [and] what you can conclude from that is limited. You can learn from it, but you may not be able to draw relevant conclusions. So that’s the big caveat with any of these stories.

Do celebrity patients profit from going public?
There was sort of a big stink—I think it was about 2000—when a bunch of celebrities were going on talk shows plugging various [products]. That’s the worst example of it and there was a backlash to that, and I think it’s happening less.

But most people who really see themselves as advocates are very careful about that. Michael J. Fox and Lance Armstrong have been very careful not to take any money from anyone who has a very strong interest in a particular product. Now, they may say, ‘I’m taking this drug,’ but they aren’t taking any money from that company. Most of the celebrities have really genuinely tried to help people.

Controlling healthcare costs is a major issue. Obviously, celebrities can afford every possible treatment. Do you think this creates an unrealistic expectation for the general public?
Maybe. Lance Armstrong is a good example here. He was able to go to multiple different medical centers and get multiple opinions and then pick one treatment. Many people can’t do that. [But] you can’t blame the celebrities for that. To some degree, it’s like anything else in America, there are the haves and the have-nots.

Having said that, I think that even if you can’t access everything, you can still learn what questions to ask of your own doctors, even if you can’t fly around the country and get 20 opinions.

Celebrities all have greater access to public officials and legislative bodies. Is that a good thing?
I think it’s good for the most part. The only people who really don’t like that are the people who don’t have a celebrity associated with their disease. So it does potentially create some inequality where if you’re more of an A-list celebrity, you can get more money for your disease, which seems like a crazy way to allot money for diseases, but that’s the way it is. So you hope that the Congress people are not simply wowed by a particular celebrity, but they’re listening to what the celebrity has to say. But I’m not sure that’s always the case.

Look, if Michael J. Fox testifies in front of Congress, which he’s done many times, you can’t help but be moved by that. He’s really genuine. If I were a congressman, I’d open up the wallet if he came there and testified. But you really want to try to give money to the most logical research, the one that’s apt to help the most people.